South Manchester Down's Syndrome Support Group May 2013

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May 2013 phone: 07593 542 107 email: contact@dsmanchester.org.uk website: dsmanchester.org.uk

Chatterbox Club Heaton Moor Evangelical church, Green Lane, Heaton Moor SK4 3LH 9.30am—12.15pm June 15 A family social occasion providing the opportunity for children to meet with others of a similar age for group speech therapy. Sessions are delivered by qualified speech and language therapists who have specialist training in the specific communication needs of people who have Down’s syndrome. If you do not enroll for the SLT sessions, you are welcome to join us for all the other activities. We have arts and craft activities, sing and sign sessions (10:10-10:30 - 0-2 years old; 10:35-10:55 - 2-5 years old; 11:00-11.20 – 5 years plus), Yoga 11.30-12.15. At our June Chatterbox club, musicians from Music in Hospitals (http://www.music-in-hospitals.org.uk/) will be joining us from 10-11am, kindly funded by The Manchester Guardian Society Trust. Music in Hospitals is a charity that organises live concerts for people who have sickness and disability in all kinds of healthcare settings: hospitals, hospices, mental health units, care homes, special schools, day centres etc… Their musicians are chosen for their musical skill, empathy and ability to engage with an audience. They will be at Chatterbox to play for us and allow the children to interact and ‘have a go.’

A huge thanks to those of you who completed the Chatterbox evaluations. Your feedback and comments are invaluable when completing grant return forms, applying for grants and for publicity. Our Chatterbox clubs from April to June 2013 are subsidised by a generous donation from NJL Consulting Would you like to enrol your child for Chatterbox Sept-Dec 2013? Provisional Dates: Sept 28th / Oct 26th / Nov 23rd / Dec 14th Contact: Helen at enrol@dsmanchester.org.uk

Friday drop-ins June 14, July 12, 10am-12noon Why not stop by for a coffee and a chat? Our resources are stored at this venue too, so you can have a look through them and borrow items if you wish. Specialist Resource Centre, Central West Office, Westwood Street, Moss Side, M14 4PH. There is parking on the roads outside, opposite at the West Indian Centre, or the car park behind the centre on Raby Rd. Ring the bell for Specialist Resource Team and ask for the SMDSSG Drop –In. phone: 07593 542 107 email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


SMDSSG Membership

Come and join us for some fun at Run of the Mill Indoor Play Centre Thursday June 13, 4.30-6.30pm Pear Mill Industrial Estate Stockport Rd West, Bredbury, Stockport SK6 2B Booked for exclusive use of our members. Members only —£5 per family, including food. You can become a member by filling in a membership form at the event. The cost of this event is heavily subsidised so extra donations always welcome! Please let us know ASAP if you would like to book a place – laura@dsmanchester.org.uk

Have you completed one of our membership forms ? If not, please fill one in ASAP As a member, you can:     

Attend social events like Run Of The Mill, Christmas parties etc Take advantage of discounted training fees Vote at our AGM Join the committee Enrol for Chatterbox SLT sessions from September 2013

FEE: Per family £5 / £3 concessions

One of our members, Michelle Massey, is organising a

curry night at the Red Rose Indian Restaurant in Hazel Grove on Friday June 14. For more details and to book a place, contact Michelle at: michelle@emergencychocolate.co.uk

Fancy A Swim? The lovely warm pool at the Seashell Trust is provisionally booked for our exclusive use on Sunday June 23 from 2-3 pm and the common room from 3-4pm, so we can have drinks and sandwiches afterwards (bring a packed tea!). Members only—you can fill in a membership form at the event—see above. Please email: swimming@dsmanchester.org.uk ASAP to register interest in a FREE place for your family.

Sharing Information …………………… If you know of any events, information , training etc that would be of interest to other members of our support group, please share them with us so that the information can go in the newsletter: contact@dsmanchester.org.uk Thanks

DSE announces additional support for new reading and language intervention Down syndrome education international (DSE) is offering support to help educators deliver evidencebased reading and language instruction to children with Down syndrome including FREE online events, an email discussion forum and blog and self-paced online learning courses. Two online events covering RLI on various dates and times are available over the coming months: Introducing RLI: effective reading and language instruction for children with Down syndrome This event is aimed at parents and educators interested in learning more about RLI. It offers an introduction to the new teaching programme, describing how it was designed and evaluated, who it is for, what is involved in delivering it, and what resources are available to support its use. Getting started with DSE’s reading and language intervention for children with Down syndrome This event is aimed at educators who have purchased the handbook and are seeking additional support getting started with the reading and language intervention. It steps through the initial preparation and assessments required ahead of starting the daily teaching sessions. More details at: www.dseinternational.org/en-gb/news/2013/03/27/support-for-new-reading-language-intervention/ phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


Artful Playground presents:

JUST US THREE AND THE SEA (written by Susanna Lloyd, Illustrated by Philip Huxley)

Meet Sedrick the Seagull and help him find his way back to the sea! One day, when out flying with his friends, Sedrick the Seagull finds himself lost in a forest with an injured wing. He wonders how he will ever find his way home! But then he meets Gerry the Giraffe, and Bernard the Bear and soon discovers what real friends are for as they set off on an adventure together to find the sea…… The story is brought to life and children are invited in! Real musicians take on the characters and introduce different musical instruments as the story is accompanied by a live musical soundtrack. The children take part in physical activities, take on characters, learn songs, and play drama games all at the same time as learning about musical instruments! (Show runs for approx 60 mins) http://www.artfulplayground.co.uk/

Saturday July 20 10-11 am Heaton Moor Evangelical church, Green Lane, Heaton Moor SK4 3LH FREE to SMDSSG members £5 for non members (to include a year’s membership) Doors open: 9.30 –12 noon. Why not bring a packed lunch? Drinks available. To book a place: phone: 07593 542 107 email: contact@dsmanchester.org.uk phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


SEN Changes There have already been changes from 1st April in how SEN support is funded in schools. What’s changing? The full detail of the changes is complex. Full details are on the DSA’s campaign pages http://www.downs-syndrome.org.uk/campaigns/changes-to-sen-funding.html The most important point to note is that for children with high needs in mainstream schools, the school will have to meet the first £6000 of additional support from its own budget. The rest of the money will come as a top up from the local authority. In many cases schools will have enough funding to cover the first £6000. However the DSA is concerned that inclusive schools that take a high proportion of children with statements will lose out. We have already taken calls on the helpline from worried parents telling us that support is being cut. Can you help?

The DSA would like more evidence about how these changes are affecting children and young people with Down’s syndrome. They can then bring any problems to the attention of education ministers through their membership of the Special Educational Consortium. If the funding changes have affected your child we want to hear from you. Please send details to the education information officer, Lesley Black, preferably by email to info@downs-syndrome.org.uk with the subject ‘Attn: L Black – school funding changes’ It would help if you could give permission for the DSA to use this information. Some things to be aware of …..  

The law on assessments and statements has not changed. Your local authority is still legally obliged to make all the provision in part 3 of the statement. Your local authority may want to change your child’s statement to reflect the funding changes. If this is happening and you are concerned about it, you can contact the DSA education information officer on 0333 1212 300 Mon-Fri 9.30-12.30

And more ……………………………………... We have a presentation from DfE used recently at a SE7 workshop which helps to explain the timescales for the SEND reforms and also contains information about the forthcoming code of practice. If you receive the newsletter by email, the presentation is attached. A summary of the new (0-25) SEN Code of Practice, it will: •Be statutory guidance •Be shorter, clearer and more concise •Cover the new 0- 25 system •Include FE colleges for the first time •Include information for Health and Social Care professionals (they are named explicitly on the face of the Bill) •Include information on the new provisions in the Children and Families Bill i.e. EHC Plans, the Local Offer, Joint Commissioning etc. •Include information on the new ‘Single Category’ •Be approved by Parliament using the negative resolution procedure

BLOGS..................... Two of our members have their own blogs: 'A Different View' at http://adifferentview-amy.blogspot.co.uk 'The Future's Rosie' at: http://www.thefuturesrosie.com/ phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


For Manchester Parents:

Manchester Carers Centre operates an extremely popular fund for parent carers of children under 18 years of age in Manchester. Applicants can apply for grants of up to ÂŁ400 to spend on taking a break from their caring responsibilities. Carers who have successfully been awarded the fund have spent their money on: Holidays, Day trips, Gym memberships, Driving lessons, Training courses. To apply for the fund you can download the application form from their website or if you require more information about the funds guidelines or your need assistance completing the form please contact the Carersline team on 0161 27 27 27 4. http://www.carers.org/local-service/manchester/services/time-me-fund If you care for someone over the age of 18 you can access the Carers Individual Budget through a Carers Assessment. For further advice and information or help with a referral please call the Carersline 0161 27 27 27 4. phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


For Manchester Parents: Disability Living Allowance Workshop Name of workshop

Disability Living Allowance (for children/ young people) Workshop - both for professionals and parents

Aim of course

To raise awareness about how to apply for DLA for children and young people and look at skills and ways to complete the form

Date of Training

Monday 10th June

Time

10.00 am-12.30

Venue

Westwood Street, Moss Side, Manchester M14 4PH

Course leaders

Rachel Cook and Catherine Shorrocks

Please contact

Rachel or Catherine on 0161 219 2125 if you would like to book a place

phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


Cerebra have a FREE lending library of books and toys They have a popular postal lending library of books on topics relating to neurological conditions, media (DVDs) and sensory equipment, such as bubble tubes, fibre optics and the ever popular Sensory in a Suitcase, which contains a range of equipment to stimulate all the senses. Anyone in the UK (including NI) can borrow items from the library and it's free to return them by using the freepost address for books or a courier service can be arranged for you for sensory equipment. You can borrow two books at a time and one sensory item for a month at a time. You can download a catalogue of the books and sensory equipment at: http://www.cerebra.org.uk/English/gethelp/library/Pages/default.aspx or calling on 0800 328 1159 to request a paper copy. To find out more or borrow a book or sensory item call us on the helpline or email janetp@cerebra.org.uk

SUMMER CADS 2013 – CADS 10th Anniversary SUMMER CADS 1 – Monday 29th July – Thursday 1st August 2013 -£65.00 full price and £45.00 with a leisure key pass SUMMER CADS 2 – Tuesday 27th August – Friday 30th August 2013-£65.00 full price and £45.00 with a leisure key pass To book a place, please contact: lydia.waker@seashelltrust or 0161 610 0122 NEW CADS SATURDAY CLUB New CADS Saturday club on Saturday 13th July 2013. The event will take place each Saturday at the Seashell Trust and will be a drop in session from 10-12pm. Seashell Trust | Stanley Road | Cheadle Hulme | Cheshire | SK8 6RQ ( Direct Line: 0161 610 0122– ext. 204 | Main Switchboard: 0161 610 0100 | Fax: 0161 610 0101

Multi Me— a new networking tool Multi Me is a concept originating from best-practice examples of Person Centred Planning (PCP), Circles of Support models and Multimedia Profiling (MMP) approaches with people with learning difficulties. It brings together the latest technology and social media approaches to create a unique and powerful solution to person centred working for use in education, home, work and leisure settings. See http://www.multime.com/ Multi Me will be working with the Manchester SEND Pathfinder project for a one year pilot. See http://www.multime.com/news/multi-me-manchester-send-pathfinder/ Young people on the Pathfinder pilot will be able to access their Multi Me at school, college and at home to develop a multimedia profile and online person centred plan that can be used to help form their Education, Health and Care Plan (EHCP) or 'Single Plan' as part of the Pathfinder pilot. Over the past few months Multi Me has held Induction days at Piper Hill High School, North Ridge High School and Newall Green High School. Other schools, colleges, services as well as families and young people in Manchester who want to take part in the Multi Me Manchester SEND Pathfinder pilot, please conact Julie Hicklin, from Manchester City Council Children's Services at: Children's Services, Manchester City Council, Mobile: 07508783921, Email: j.hicklin@manchester.gov.uk

phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


Ongoing Activities DSActive football sessions with Moorside Rangers* Victoria Lane (Beechfarm Playing Fields) Swinton Manchester M27 9LF. Sunday mornings every fortnight 11am-1pm. http://www.dsactive.org/ teams/moorside-rangers-dsactive/ Contact Ian Clarke at clarkey@parklife.fsworld.co.uk.

EST Donkey sanctuary Manchester, Green Fold Abbey Hey Manchester* M18 8RJ www.elisabethsvendsentrust.org.uk/view/manchester. For children with additional needs and their families. Rides are booked in as you arrive from 10am—1pm. Saturday clubs usually third Saturday of the month Tel 0161 301 4051. Relax over a cup of tea/coffee, bring a picnic or have a snack and meet other parents, carers and supporters.

All ability cycling* No need to pre-book, just drop by, cycling for all abilities and opportunity to learn cycle skills with qualified teachers. Please call the numbers given in advance for details. Please phone to check holiday times Trafford Wheelers Longford Athletics track, Ryebank Rd Stretford M21 9TA. Sundays 1-3pm £2 per session. Call Helen 07871621778. Stockport Wheelers Woodbank Park, Saturdays 2.00 -4.30, Call Sue 07753428937. Wythenshawe Wheelers The Athletics Facility, Wythenshawe Park, Wythenshawe Road, Manchester M23 0AB. Sue 07753428937. Saturdays 1—3pm, £1.50 per session. The Velodrome, The National Cycling Centre, Stuart Street, Manchester M11 4DQ Tuesdays and Wednesdays, 1 – 3.30pm, Call Helen 07871621778.

CADS (Children’s able and disabled sports) Clubs* www.seashelltrust.org.uk/cads Please contact Gemma at the Seashell Trust | Stanley Road | Cheadle Hulme | Cheshire | SK8 6RQ Direct Line: 0161 610 0122 gemma.lynch@seashelltrust.org.uk · Tuesday: Climbing 6-7pm, ages 5-16 £24.50/term Wednesday: Gymnastics 6-7pm. £24.50/term: Kids Yoga 5.15-6pm. £24.50 / term Friday: Football 6-7pm, ages 5-11; 7-8pm, ages 12-16 £24.50/term* · Saturday: Dance and Drama, 10am—11.30, ages 4-11; 11.45-1pm, ages 11+£24.50/term

Manchester Specialist Resource Team groups* Stay and play sessions for young children with disabilities are held throughout the city. For more information about any of these groups contact Donna Griffin on 219 2648

The Friendship Club* for school age children who have Down‘s syndrome, their siblings and friends to socialise together. Interested? Contact Caroline Sheehan on 0161-925-6153.

L’Arche prayer evenings* A chance for people with learning disabilities, their friends, carers, family and friends to pray and reflect together. Stay for a cup of tea and biscuits afterwards! Every first Wednesday in the month, 7.30pm, at Chorlton Central Church, Barlow Moor Road, Chorlton, M21 8BF (Corner of Zetland Road and Barlow Moor Road). Fully accessible venue. Contact: Kevin on 07714 397333 or at kevin.coogan@larche.org.uk. *Please note: not run by the South Manchester Down Syndrome Support Group. For information only—we are not responsible for changes to date, time or venue. Please use the contact information supplied to confirm details and to ask any questions.

You can now find us on Facebook at http://www.facebook.com/SMDSSG Come and like the page and keep up to date with what the group is doing.

phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


Take a look at Stockport Mencap’s website: http://www.stockport-mencap.com/index.html Lots of useful information, including the many clubs they run:

GATEWAY CLUB What is it? Drop-in disco, chance to play pool, catch up with friends and have fun over a drink and biscuit When does it meet? Every Thursday evening from 7.00 - 9.15pm Where does it meet? Prospect House Who is it for? Any adults with learning disabilities. Please note we are unable to provide supervision. If care/support is required, this must be arranged independently and carers are most welcome. Anyone traveling by taxi should arrange for a pick up time of 9.00pm How much does it cost? 60p per visit. Contact for more information: Chris Mulroy on (0161) 494 1016 GATEWAY PLUS CLUB What is it? Activity-based group taking part in art and craft projects, film watching, 10 pin bowling, etc, and generally having fun with a drink and biscuit When does it meet? On alternate Wednesday evenings from 7.30 – 9.00pm Where does it meet? Prospect House Who is it for? Any adult with learning disabilities. Please note that we are unable to provide supervision. If care/support is required, this must be arranged independently and carers are most welcome How much does it cost? 60p per visit. Contact for more information: Chris Mulroy on (0161) 494 1016 PENGUINS What is it? Gateway swimming club When does it meet? Every Friday at 8.20pm, swimming from 8.30 – 9.15pm Where does it meet? Foyer of Grand Central Pool, Stockport Who is it for? Any adults with learning disabilities. Please note we are unable to teach people to swim or to provide supervision. If care/support is required, this must be arranged independently and carers are most welcome How much does it cost? 50p per visit Contact for more information: Please ring Linda Abernethy if you would like to join before you come along. Linda is available between 6.00 – 7.30pm on any weekday evening on (0161) 487 2502 TRANS16 What is it? A small friendship group that samples a range of activities When does it meet? The group usually meets on the last Monday of each month (times vary according to activities) Where does it meet? Various locations depending on the activity Who is it for? Young adult members of Stockport Mencap and their parents. Young people must be accompanied by a parent. Parents are involved in organising and supporting the activities How much does it cost? There is an annual membership charge of £15. Meeting costs vary according to the activity. Contact Janet el Mikatti 0161 485 4068 or Glenys Goodwin 0161 494 8421 to discuss membership ABC FAMILY GROUP What is it? The aim of the ABC Family Group is to provide a setting for all the family within a play environment with plenty of toys, games and activities to keep everyone busy. It is an opportunity for families to make friends with families in a similar position and share experiences When does it meet? Every other Saturday afternoon between 2.00 – 4.30pm Where does it meet? Prospect House phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


Who is it for? Children with special needs under the age of 11, their families and carers. All children must be accompanied throughout their visit. How much does it cost? Donations are gratefully received. Contact for more information: Dawne Fawcett-Tandy on (0161) 428 2429 or visit www.abcfamilygroup.com ABC+ What is it? A youth group taking part in a range of games and fun activities When does it meet? Every other Tuesday between 7.00 – 8.45pm Where does it meet? Prospect House Who is it for? Young people between the ages of 11 – 16 with a learning disability. How much does it cost? Donations are gratefully received. Contact for more information: Dawne Fawcett-Tandy on (0161) 428 2429 or visit www.abcfamilygroup.com

Moving On To Secondary School The authors met with pupils, school staff and parents in three Peterborough schools, to find out about their experiences of this transition. They wanted to produce some resources to support schools to plan successful transitions. And have developed the following three guides:

Top tips for pupils moving on to secondary school This is an easy-read guide that includes a checklist and poster, to give young people simple ideas of how to prepare for the move to make it less stressful. Useful information for parents who have a son or daughter with special educational needs (SEN) moving from primary to secondary school Some practical ideas for families, to help support their child to feel more prepared and able to cope with the move to secondary school. This resource complements the Top Tips for pupils. Moving on - good practice in facilitating primary to secondary transitions for pupils with special educational needs (SEN) This guide is aimed at teachers and is divided into good practice suggestions for primary and secondary school staff. Some of the ideas are very practical and can be achieved quickly, others may take a little more planning, and there are other suggestions to consider that will require strategic or systemic change. Available at:

Bedroom Tax If you have a child with additional needs and want to contest the bedroom tax, Contact a Family have created 2 letter templates that you can use: one for those in social housing and one for those in the private renting sector. See: http://www.cafamily.org.uk/news-and-media/beat-the-bedroom-tax/

Have your say about local health and social care provision Healthwatch England is the independent consumer champion for health and social care in England. See http://www.healthwatch.co.uk/

First fully comprehensive free comparison website for care services http://www.nhs.uk/CarersDirect/Pages/CarersDirectHome.aspx phone: 07593 542 107, email: contact@dsmanchester.org.uk website: dsmanchester.org.uk


Dear parents/carers, Over the last year and a half many families have lost financial support from various places because of the economic crisis we are currently living in. There are many changes taking place and lots of you are being given different information as to what you may be entitled to apply for within Stockport. Audrey Wilson, one of Independent Options service managers has had many years experience guiding families through benefits and entitlements and will be doing a session on Thursday 4th July 2013 at 9.30-12.30 to share this vital information with any of you who wish to come along. To tailor the session to cover everyone’s needs she has asked that you let her know which topics to cover (please choose two). It will also be important to know if your child has a diagnosis or not to make sure that everyone who attends will benefit from the training. These are the options for you to choose from. Guide to financial support for disabled people Changes to Disability Living allowance/motor disability Carers’ allowance Housing benefits Changes to income support for lone parents (literature will be provided) If you would like to book your place please email me at rkhan@independentoptions.org.uk or contact me on 0161-482-2535 Yours sincerely Rifath Khan (Family Support Worker)

Seashell Swim Intensive Swim Camp Structured swimming lessons for children of all ages and abilities held in our main pool. All lessons linked to the National Swimming Plan for teaching with the aim of badges awarded at the end of the week. Dates: 3rd June 2013 to 7th June 2013 5th August 2013 to 9th August 2013 19th August 2013 to 23rd August 2013 Duration: All are 45 minute lesson each day for 5 days. Times: Classes between 9:30 and 12:30 (Lesson times will be allocated a week before the event) Cost: £32.50 TO BOOK PLEASE CONTACT WENDY.MCNEIL@SEASHELLT on 0161 610 0159, or wendy.mcneil@seashelltrust.org.uk We are a fully inclusive Swim School for every one of all abilities! Dive in.... we’re making a splash!


Dates for your diary Run of the Mill

June 13

Drop-in

June 14

Chatterbox

June 15

Swimming

June 23

Drop-in

July 12

Artful Playground

July 20

Birthdays This Month Happy Birthday To Harvey G. (10) Yannah K. (2)

Lucas P (5) Elsie T. (1)

The views and items in this newsletter are not necessarily those of the South Manchester Down’s Syndrome Support Group. Mention does not necessarily mean recommendation or support.

SMDSSG PO Box 307 Manchester M21 3BR

Registered Charity No: 1147397 May 2013 phone: 07593 542 107, email: contact@dsmanchester.org.uk


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